19 things you need to know about Crohn's Disease

Having Crohn's is SCARY, true story. And a big part of the scariness is the unknown. For an increasingly common disease, it's not often talked about.

Sure, one reason for this is that no one really relishes talking about their toilet habits (unless you're like a former flatmate of mine who spoke about his daily motions with a David Attenborough-like sense of awe and fascination). However, things become less scary the more you talk about them.

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So, here are 19 things you don't – but should – know about Crohn's Disease

1. Crohn's Disease is a horrible, prickly beast of a disease. It's chronic and there's no cure, and it can be a complete nightmare to live with. It'sone of the two main inflammatory bowel diseases (the other is Ulcerative Colitis), categorised by inflammation, ulceration and sometimes perforation of the wall of your intestine.

2. It can strike anywhere in the digestive tract, from mouth to… how do I word this delicately?… arsehole? Yeah, no point skirting around it. However, it has a particular fondness for the ileum (the last section of the small intestine) and the colon (the large intestine).

3. It's estimated to affect 1 in 650 people in the UK, which means it's likely that at least one of your Facebook friends also has it – or more, depending on how popular you are.

4. The cause isn't clear. Experts think it's a combination of genetics, an abnormal reaction by your immune system to bacteria in your gut, and an environmental trigger, which can be anything from a virus to smoking. When I was diagnosed at 17, I began to think of my immune system as a deranged and oversensitive old woman with a shot gun: no one knows how she got the shotgun, or why she's so angry, but by hell does she cause some serious damage whenever she feels like it.

5. The main symptoms include stomach cramping, diarrhoea, fatigue (also known as CONSTANT, OVERWHELMING TIREDNESS), loss of appetite and unexplained weight loss, anaemia, and generally feeling a bit crap. But those are entry-level symptoms. Flare ups can trigger a whole other level of pain and complications…

6. Flare ups, or as I sometimes call them: OH MY GOD WHAT HAVE I DONE TO DESERVE THIS?!, are periods when the disease is most active and destructive. Sometimes, but not always, it can involve a hospital stay.When Crohn's is in remission, sometimes you can have no symptoms at all (lucky) or, more commonly, a mildly irritating but not wholly disruptive background grumble.

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7. Everyone has a slightly different experience of Crohn's. There are common symptoms, yes, but the triggers vary from person to person, be it a certain food, type of alcoholic drink, or stress. Some people manage it through diet, others through exercise and meditation. Almost all use medication of some form because it's a serious illness that needs some serious drugs to deal with it.

8. Crohn's doesn't have ANYTHING to do with your diet. Diet can aggravate or alleviate your symptoms, yes, but there is no evidence to say that a particular kind of food causes Crohn's. When people say, "Have you thought about cutting 'x' or 'y' out?" it's kinda annoying.

9. There is no cure for Crohn's, but different kinds of treatments. Medical interventions are mainly concerned with alleviating the symptoms and preventing malnutrition, because when your gut is angry and sore it finds it difficult to do its job. These can vary from anti-inflammatories and dietary supplements like iron, calcium and Vitamin B12, to immunosuppressants – or as I like to call them, "The Big Guns".

10. Surgery for Crohn's follows one basic principle: cut the bad part out. Yep, just hack out the worst of it and hope for the best. Many sufferers will have surgery at least once in their life, but there is only a finite amount of gut and once hacked, it ain't going to grow back. Sometimes surgery puts things into remission, but sometimes this involves some consequences, such as a stoma. A stoma is basically a pouch to collect "matter" outside of the body, avoiding the whole car crash of your digestive system all together.

11. Liquid diets are a thing.They allow the gut to have a rest from digesting and focus on CALMING THE HELL DOWN. These usually involve milkshakes. Fun for the first few "meals" but after a week you'll be dreaming about hot, buttery toast or greasy, crispy pork scratchings.

12.It's not infectious, so please don't disappear in a cartoon cloud of dust. People with Crohn's need love and hot water bottles. Spooning and cooing also helps.

13. It's often considered an "invisible" disease because: a) it's not particularly pleasant or easy to talk about and b) people with Crohn's can hide it quite well, providing it's relatively under control or in remission. Hiding it from friends and family might save you embarrassment, but it can also deprive you of a much-needed support system, especially when you're having a flare up.

14. The impacts of Crohn's aren't solely physical. Sufferers, like many others with chronic illnesses, are vulnerable to mental health issues such as depression and anxiety. This is because living with a chronic illness is bloody hard, and it, unsurprisingly, can cause problems in your relationships, work and everyday life in a way that can make you really sad and anxious.

15. Living with Crohn's teaches you how to ask for help. It can be scary but it can be lifesaving. No amount of awkwardness is worth getting really, really ill over.

16. Those toilet humour jokes you may have found hilarious as a five year old, suddenly might not be so funny anymore. Somehow, fart jokes are less amusing when you suffer from an illness where medical professionals are constantly asking about your poop and trying to stick a camera up and in you without even buying you dinner first. For similar reasons, anal sex may be a sore topic – literally and emotionally.

17. Once you get a handle on your condition, you will learn what your limits are, and these may vary from not being able to eat certain foods (and resenting the "clean eaters" who choose not to) to not having the energy to do anything and everything you'd like to. I'll be the first to admit that acknowledging that you are more limited than other people is a difficult pill to swallow.

18. Try not to view Crohn's and your body as The Enemy, keen to sabotage everything you want to achieve in life. Treat it like an annoying friend that really just wants some kindness and compassion. Try naming it. I call my broken tummy Melissa. I mostly hate her, but I'm learning that she suffers as much as I do and the only way we'll get through it all is if we listen to and are kind to one another.

19.Crohn's is a horror of a disease, but you can survive it. With the support of friends and family, a squad of medical professionals and a plethora of medications, you can lead a happy life. Sure, sometimes you'll have to say no to that curry night, or cancel plans in favour of sitting at home in your pants eating ice cream feeling sorry for yourself, but you are not defined by it. You are not Crohn's Disease; it's just something you deal with. It's hard, but you can get through it. You will get through it.